Re: Talk about your troubles

MRD - You have certainly been through the mill with this. I really hope that something gets figured out soon. I'm sending a great big hug your way.

My trouble is very minor compared with others, but I'm still bummed. This coming weekend is the Firemen's Convention at the NJ shore (Wildwood). It's a big thing every year, and we go and stay at a local campground. We've had our reservations since last year. Unfortunately, this year, I can't go. Our son has his job at the restaurant working Friday and Saturdays from 3-11 and since he doesn't have his license yet, I have to take him. So my husband left this morning by himself and I'm stuck at home.

Re: Talk about your troubles

So sorry you had to miss your fun weekend, ScoutMom.

I haven't read this thread in awhile. Not because I'm not interested, but because it's hard for some people to keep up. It's like a big big house, with rooms everywhere. I have to keep it very contained, outside of the Fun and Games. A few rooms here, a few rooms there, stay on top of them. I feel like Gretel with breadcrumbs. I have a lousy memory of the last five or six pages, but I remember that, BoBo, my prayers are with you and your Mom. The two ladies who wish to have a child, I so wish that for you too. Now there is a wish worth making if there ever was one. I'm going to channel the sun and the moon and the stars for you both. To the others who are facing challenges, I wish you hope and strength.

Re: Fibromyalgia

Originally Posted by myrosiedog;2570942;

Well Swamp Fever seems to be doing well. I man, 3 national titles in 2 years. I'd say those side effects are good ones!

Well last night was hell! When I got the new medication, I talked to my doctor at lenghth about it and my concerns. I have bad drug reactions and always have. He looked at me like I had 2 heads and said he'd never heard of anyone having a problem. I was to take it at bedtime. I had already gone over all my current medications with him and I reiterated that I already took something at bedtime and would this interfere with it. "no, it wouldn't"

So last night I take my new medicine and my old one. Withiin an hour I had hives all over my head, face, neck and chest. My vision was blurry, I had trouble balancing, I was nauseous and here's the worst. I kept seeing a calico cat. We don't have cats. That really freaked me out and at 10:30 we are on the phone with the doctor. Of course, he's never had a problem with anyone before, but he's concerned about the hives. Apparantly the cat hallucination only concerned me. So he had me take a benedryl and go to bed and I feel hung over and lazy this morning. But no more taking this medication. And the cat is gone this morning thank goodness. Just plain weird.

I don't know why doctor's will NOT listen when I talk to them about my concerns. I know I've had bad reactions to medication in the past. I tell them about it and they reassure me everything will be fine and then its not. ARGH!
I am frustrated this morning and not happy about last nights episode.

This isn't a new idea, but thought I would mention it. I have a very low tolerance for just about any medication. 1/2 a vicodin for my toothache knocked me out and left me a little "fuzzy" in the morning.

What I have learned to do is stand near the prescription pick-up counter and read all the information they give you. If not satisfied, I will ask for a copy of the packaging insert. Then I will go and ask the pharmacist questions directly. May sound silly but I want to KNOW how much Ibuprofen will mess with my blood pressure ... and is there anything in the anti-biotic that even vaguely resembles sulfa ... etc. Finding out that I was allergic to sulfa drugs was a very unpleasant experience. I wasn't covered with hives ... I was a hive !

I find that most pharmacists are knowledgeable and are willing, even anxious to help and will tell you a lot of interesting information regarding medication management, and what to look for as regards a "reaction". Doctors just don't know as much about meds as that is not their focus. After talking to the pharmacist write it down or ask him/her to, and then talk to your doctor.

Incidentally ... the gator-hater Doc sounds like a good one and besides his questionable taste in teams, it sounds like you had immediate trust and comfort in his care. Stick with it.

I would love to give you my amateur diagnosis of your mystery ailment, but don't know all the details. It does sound as if it's auto-immune and I know they are notoriously the hardest to diagnose ... it takes years sometimes while they rule out what it's not.

I just hope symptom-wise the good peaks are longer than the bad valleys until they figure it out.

Re: Fibromyalgia

Originally Posted by echo226;2572491;

This isn't a new idea, but thought I would mention it. I have a very low tolerance for just about any medication. 1/2 a vicodin for my toothache knocked me out and left me a little "fuzzy" in the morning.

What I have learned to do is stand near the prescription pick-up counter and read all the information they give you. If not satisfied, I will ask for a copy of the packaging insert. Then I will go and ask the pharmacist questions directly. May sound silly but I want to KNOW how much Ibuprofen will mess with my blood pressure ... and is there anything in the anti-biotic that even vaguely resembles sulfa ... etc. Finding out that I was allergic to sulfa drugs was a very unpleasant experience. I wasn't covered with hives ... I was a hive !

I find that most pharmacists are knowledgeable and are willing, even anxious to help and will tell you a lot of interesting information regarding medication management, and what to look for as regards a "reaction". Doctors just don't know as much about meds as that is not their focus. After talking to the pharmacist write it down or ask him/her to, and then talk to your doctor.

Incidentally ... the gator-hater Doc sounds like a good one and besides his questionable taste in teams, it sounds like you had immediate trust and comfort in his care. Stick with it.

I would love to give you my amateur diagnosis of your mystery ailment, but don't know all the details. It does sound as if it's auto-immune and I know they are notoriously the hardest to diagnose ... it takes years sometimes while they rule out what it's not.

I just hope symptom-wise the good peaks are longer than the bad valleys until they figure it out.

I have a GREAT pharmacist and since I am in there at least once a month, he and I have developed quite a rapor. He has done some intensive reseach on meds for me and even called me at home once to check on me after I got a new medication that I was particularly concerned about. But even he had said that this one shoudl cause me no problems. Ha! If there is an exception to the rule, then I am it. The dr. I saw the other day was rolling his eyes, (but laughing) because I told him that I like to do a lot of research (I used to work for a doc so I know what he was thinking. So many people come in saying "I read this on the internet so I think I have Tsetsy Fly Fever or some such strange ailment") and I do. I tend to read as much as I can. I want to be informed and I want to know what I'm taking because I do have drug reactions. I think now, the dr. knows this as well.

Well the concensus of my "team" of doctors is that it is auto-immune. But exactly what, they do not know. And in my extensive reading I know that it can take years for people to get a diagnosis. I just want to feel better. That's all. I dont care how or why, I just want to feel better. And I have days I feel great aqnd then may go a week where I feel like poop on toast. It's so hard to plan anything as I never know what that day may be like until I get up. And its just so strange. Today I may have pain, tomorrow I may have horrible fatigue and no pain. the ONE thing that never seems to ever go away is the horrible shaking. It gets better, but it never stops entirely. And to be honest, that is the one that bothers me the most as it interferes with most of the things I try to do. Paint my nails? Ha! Not if I want the entire tip of my fingers or toes painted as well. On particularly bad days, I am a danger just using a knife to chop veggies in the kitchen.
And I scrapbook and rubber stamp. I sew. Or I should say I used too. I have noticed that it is particularly hard to do these things as the shaking and loss of dexterity in my fingers makes it hard to do really fine or small work anymore.

Ah well, it could be worse. There are a lot of worse things I could have and I'm thankful that I don't have them. I guess I will learn to live with this. I have been. I do get frustrated, but what can you do. Worry about the things you have control over and don't worry so much about the stuff you can't control. And have faith. That's about it.
And I'm thankful to my family and friends and FORT friends that give support. Just kind words or a smile is a real boost. Thanks.

Re: Fibromyalgia

Originally Posted by myrosiedog;2570175;

The dr. I saw today talked to me quite a bit about the fibromyalgia and I said well that's funny because your partner told me in June, I don't have fibromyalgia and he doesn't believe in it. This one just rolled his eyes and said that it is something that gets a bad rap from a lot of doctors and that too many people have too many of the same symptoms and pain for it to be imaginary. He did say that Lyrica has just been approved recently for treatment of FM pain and that he could prescribe it if I needed it. I'm not in pain and haven't been in months. But I would like to try the lyrica next time I go through a bout of pain.

I just feel like I'm the rope in tug of war. It's FM, it's not, it's MS, it's not, it's a tumor, it's not. And while I liked this doctor he had the gall to dis my football team. :nono I had my Gator purse and that was the first thing he remarked on. Even though he went to our arch rival, FSU, I still liked this doctor better than his partner. But he's going to have to quit on the Gator badmouthing!

You haven't had any great pain for months ...Myrosiedog......that's great news.. Did you change your diet...or activity level?.........

My pain is still off and on. I have been working out at the gym.....gently I must say. I just have to be careful not to over do it.

I really felt good when I went on a special diet in January. I ate fruit and vegetables, little fish and a little chicken. No oils, no refined sugar...only honey for sweetner and very low sodium. I felt great. My blood pressure was normal.....But I'm just not disciplined enough to stick to it for longer than a couple of months

Re: Fibromyalgia

Originally Posted by myrosiedog;2570175;

The dr. I saw today talked to me quite a bit about the fibromyalgia and I said well that's funny because your partner told me in June, I don't have fibromyalgia and he doesn't believe in it. This one just rolled his eyes and said that it is something that gets a bad rap from a lot of doctors and that too many people have too many of the same symptoms and pain for it to be imaginary. He did say that Lyrica has just been approved recently for treatment of FM pain and that he could prescribe it if I needed it. I'm not in pain and haven't been in months. But I would like to try the lyrica next time I go through a bout of pain.

This is going to sound like strange, but for those here suffering from fibromyalgia, ask your doctor about giving over-the-counter Mucinex a try. I've been taking the stuff for the recurring bronchitis that I've been suffering from much of the year, and in researching it, have seen a lot of reports from people suffering from fibromyalgia claiming that it helps their with their symptoms greatly.

Re: Fibromyalgia

Originally Posted by myrosiedog;2572640;

Well the concensus of my "team" of doctors is that it is auto-immune. But exactly what, they do not know. And in my extensive reading I know that it can take years for people to get a diagnosis. I just want to feel better. That's all. I dont care how or why, I just want to feel better. And I have days I feel great aqnd then may go a week where I feel like poop on toast. It's so hard to plan anything as I never know what that day may be like until I get up. And its just so strange. Today I may have pain, tomorrow I may have horrible fatigue and no pain. the ONE thing that never seems to ever go away is the horrible shaking. It gets better, but it never stops entirely. And to be honest, that is the one that bothers me the most as it interferes with most of the things I try to do. Paint my nails? Ha! Not if I want the entire tip of my fingers or toes painted as well. On particularly bad days, I am a danger just using a knife to chop veggies in the kitchen.
And I scrapbook and rubber stamp. I sew. Or I should say I used too. I have noticed that it is particularly hard to do these things as the shaking and loss of dexterity in my fingers makes it hard to do really fine or small work anymore.

Ah well, it could be worse. There are a lot of worse things I could have and I'm thankful that I don't have them. I guess I will learn to live with this. I have been. I do get frustrated, but what can you do. Worry about the things you have control over and don't worry so much about the stuff you can't control. And have faith. That's about it.
And I'm thankful to my family and friends and FORT friends that give support. Just kind words or a smile is a real boost. Thanks.

Have they ruled out Lupus? I don't know much about it other than it's one of those disease that is hard to diagnose.

Re: Fibromyalgia

You haven't had any great pain for months ...Myrosiedog......that's great news.. Did you change your diet...or activity level?.........

My pain is still off and on. I have been working out at the gym.....gently I must say. I just have to be careful not to over do it.

I really felt good when I went on a special diet in January. I ate fruit and vegetables, little fish and a little chicken. No oils, no refined sugar...only honey for sweetner and very low sodium. I felt great. My blood pressure was normal.....But I'm just not disciplined enough to stick to it for longer than a couple of months

I have recently changed my diet and am on a hypoglycemic diet, but before that, I was doing the UltraInflamX diet. Sort of. I take the UltraInflamX shake daily and while it took almost a month to really work, it REALLY helps. Metegenics is the company that makes it. I buy it online. It is kind of expensive, but worth it to me as it does help a lot with the pain. It's a medical "food" and is basically a mxture of vitamins, minerals and amino acids in combinations that help reduce inflammation and pain. It has helped immensely with IBS, that it helped within just a few days.
And I just recently read to avoid the nightshade family: tomatos, potatos, peppers and eggplant as they are inflammatories. I have done fairly well except for tomatoes, but I don't eat those all that often.

And mine cycles too. So I could just be in a non-pain cycle. I don't know. I know the doctors don't know, but when I do find something that works, like the UltraInflamX then I'm going to stick with it.

I've heard the mucinex thing too. In fact I researched it a bit and the doctor that came up with it. What makes me leary is that to be effective you have to take a rather LARGE dosage of mucinex. I can't remember exactly, but it seems like its like 4-6 times the normal OTC amount and that it makes you feel worse before you feel better. The LA doctor that came up with it says that it sometimes takes 2 months of feeling lousy before you feel better with the mucinex. I am just leary of taking a large dose of anything that has not been truly researched about the effects. I have bad drug reactions and I want to know what the long term effects of taking such a large quantity over a long period of mucinex are. And the 2 months of feeling worse before better doesn't appeal either. The jury is still out for me on this. Maybe when there is more info on it, I'll consider it.

They have ruled out lupus and lyme disease as definates. But they are flip flopping on the FM, MS and Parkinson's (seems to depend on the doctor too, one says MS, one says No, One says FM, another doesn't believe in FM, so its just seemingly so random even with doctors.) There is NO definitive test for any of these I guess. There are tests that can help, but from what I understand its a progression of symptoms and ruling out everything else before standing firm on a diagnosis. One of the things the dr. said last week was that he needs to see me during a flareup as that can be more telling than seeing me on a day I feel good. And he said that he might order another MRI during a flare because apparantly it can show stuff during a flare. He also said he's considering an MRI of the spinal column as well for lesions. He did say that the spinal tap I feared so much would be a last resort kind of thing.

Re: Talk about your troubles

Well, I had an exciting weekend. I spent yesterday in the ER and the CAT scan showed I had a sizable cyst. They recommended that I see an ObGyn asap. I called around this morning and not one in the area accepts new patients without insurance. The fact that I pay at the time of service doesn't mean anything.